By Anne on Thursday, November 08, 2001 - 12:39 pm:

My name is Anne and I am 15. I have hypermobility in my CMC joints at the base of my thumbs. I went to Philadelphia to see a hand specialist who said that I had EDS type 4 benign. I have since found out that EDS type 4 is the vascular type and I am skepticle of this diagnosis. If anything I think I may have type 3. I recently had a joint capsul shrinkage and so far the results are promising. Ive been all over the internet, but loose joints in the thumbs are hardly mentioned. I was just wondering if anyone else out there might have the same problem as me or maybe someone can help me tell whether or not I have EDS.

By Lynn Gallant-Blume on Saturday, November 10, 2001 - 08:01 am:

Hi Anne! My daughter Kirstin (17 yrs) also has thumb problems (she had dislocated it over a year ago and now it subluxs and hyperextends, etc). Have you looked at the web site for the Silver Ring Splint Co (www.silverringsplint.com)? We are trying to get a thumb splint for Kirstin, although we are having some trouble dealing with the company, so I'm not sure if I can recommend them yet. We are in NJ, and apparently there's no one around here who knows how to size for the rings. If we're successful, I'll post to this site. Meanwhile, you mentioned joint capsule shrinkage- was this for a shoulder or another joint? My daughter has had this procedure twice (same shoulder), the last time at CHOP with Dr. John Gregg. Where did you go and who was the surgeon? How's your recovery? My daughter is Hypermobile type which was diagnosed by a geneticist (Dr. Page Kaplan)at CHOP. I suggest you verify whether or not you have Vascular type for your own peace of mind. Good luck, Lynn

By Anne on Thursday, November 15, 2001 - 12:00 pm:

Lynn, I had a joint capsul shrinkage on the cmc joint in my thumb. It was the only option offered other than fusing the joint. I saw Dr. Osterman (not the correct spelling) at the Philadelphia hand center. He's a great doctor. It's been about two months since the surgery, and it looks good although it may be a little too tight. How were your daughter's surgeries? How effective were they? This thumb procedure is fairly new and they could not predict long-term results.

By Mei on Thursday, November 15, 2001 - 03:11 pm:

I tried getting silver ring splints for my thumb (both joints) for months. It proved fairly impossible to create something my thumb couldn't wiggle it's way out of. (both joints easily bend 90 degrees both ways and can be twisted around more than 90 degrees aswell). Apart from that I had some trouble with my suplier too...
I now wear wristsupports that also fixate the base of my thumbs, the top joint is still free which has been devastating for that joint, it is now locking all the time, clicking and sounding like a sponge or gravel or something.

By Lynn Gallant-Blume on Friday, November 16, 2001 - 04:10 am:

Hi Anne and Mei; My daughter's first capsular shrinkage (shoulder) lasted 13 months. However, she was apparently re-habbed incorrectly- the PT stretched her shoulder until it was no longer "too tight" and then started with strenghthening the joint. Also, she is (was) a competitive swimmer, so she was really stressing her shoulders as well as building muscles. Her second surgery (Dr. Gregg at CHOP) was the shrinkage plus a Bankhart Procedure (which tied loose/ torn ligaments to the rotator cuff). That was last April. She re-habbed faithfully and everything looked good until three weeks ago- she was "dancing" in the hallway between classes (she's a senior) and the arm dislocated again. So she's back in the immobilizer again until next week when Dr. Gregg will evaluate her again and decide if she needs more surgery. If anyone plans to have this surgery, please fell free to e-mail me with any questions. As far as your joint being too tight- don't try to loosen it, as it will gradually loosen on it's own. (My daughter's Hypermobile). If they haven't suggested PT, please ask for a course of it. Kir has kept several joints "usable" because she has kept them strong. Mei- I'm still waiting to actually receive the ring splints, so I don't know if they'll help Kirstin- she probably will need some other support for the whole hand eventually, but I had hoped the rings would be an interim help. SHe also clicks and pops! (almost every joint); the dr says it's nothing to worry about, but it's certainly unusual! Good luck to both of you, Lynn

By Erie on Monday, December 02, 2002 - 07:03 pm:

Hi Anne. First, EDS type IV (vascular) is NOT benign. It is the most dangerous form of EDS and can shorten the life span drastically. You really need to see a geneticist (or informed rheumatologist or other doctor) to get a correct diagnosis and learn how to deal with your specific type of EDS. Any form of EDS can be dangerous in some situations (a large number of us wear medical alert jewelry). I'm classical type (old type 1 or 2) and also have a lot of trouble with both the base and "knuckle" joints of my thumbs. I wear plastic splints on both hands that were custom-made by a hand therapist. There are also several thumb braces available in stores (if you aren't allergic to neoprene like me). Ring splints can't help with the lowest basal joint of the thumb. Try to prevent arthritis reserve surgery as a LAST option, especially if you ever plan to do anything (career-wise) with your hands. I hope this makes sense, I had tp take a break in the middle because my roommate set of the fire alarm in the entire apartment building.

By Rosemary Small on Sunday, June 15, 2003 - 07:30 pm:

About a year ago I had two hard thermoplastic braces, hand molded to my hands, made by a local hand therapist. They are specifically to prevent motion in the lower joints of my thumb. I had him make them as narrow as possible leaving my fingers and palm fold and wrist free and the top joint of my thumb(s) free. They slip on and are held in place with velcro. They are black and most people seem to assume they are some sort of short leather! driving glove. They are wonderful. I can turn pages, sew, type and go out in public without worring about a brush with something or someone moving those low down thumb bones. I think the hand therapist said these are usually made longer in length and more restrictive for people with carpel tunnel sydrome or hand injuries. I love having my hands back.